When I was 13, I was diagnosed with a rare, progressive neuromuscular condition called Friedreich’s ataxia. My condition means I find it hard to balance and my energy is low, so for the past two years I have relied on a wheelchair. My cognitive ability and aspirations of a career remain intact, despite the obstacles.
In England and Wales nearly one in five people has some sort of disability, so the chances are you know somebody in my position — whether their condition is visible or not. So why do so few of us make it through mainstream education and into the world of work?
Now I am 21, my attention should be focused on my degree in French and Italian, and my summer internship in London at the Financial Times. Yet, I am struggling with the practical and administrative problems that go with being disabled. Each day brings low-level difficulties that add up to an overwhelming sense of exhaustion and defeat. It’s no wonder so many of us give up on our ambitions.
This summer, moving to London, where often the most prestigious internships are on offer to young people, has not been easy. Between time-consuming mix-ups with inaccessible accommodation and getting used to a new transport system, the UK capital is not designed for people in wheelchairs.
Of the 270 Tube stations dotted around the city, just 50 are fully wheelchair accessible. What should be a 20-minute bus journey between my flat and the FT’s offices can easily turn into an hour-long marathon if I don’t plan ahead meticulously. The navigation apps that most people take for granted, such as Citymapper and Google Maps, often lead me down an inaccessible route, wasting yet more time. On my first day of work, I was mortified to find myself late due to taking a 10-minute detour — even though I had already factored in additional time for mistakes, a lesson my mum drilled into me.
It is not just the world of work that defeats disabled people like me. Education, too, has been difficult. At school I could be seen as difficult for requesting reasonable support, so I had hoped higher education would be easier.
But at university, as my mobility worsened and my co-ordination deteriorated, I quickly discovered that would not be the case. I began to loathe the tricky cobblestones and cracked pavements of my university town that others find so picturesque.
Navigating the academic system is also difficult. This year, at the start of my Italian exam, I asked the woman who was acting as my scribe (the physical act of writing itself absorbs all my concentration) about her fluency and she admitted she had never studied Italian but learned French at secondary school. The result was I had to spell out every single word of my essays. It was as annoying as you’d imagine.
My heart is set on going to Italy to study for a year and to become fluent in the language, but the disability service in my university suggested it would be easier for me to stay in my university town, while my friends set off across the continent. The issue has not been resolved.
According to Unesco, of an estimated 650m people with disabilities in the world, only 36 per cent complete primary and secondary education. The proportion of university students with disabilities is much lower. According to HESA, the data body, 6 per cent of the UK’s student population is disabled. Of 16,700 students in my university, I can count the number of wheelchair users on one hand. So I understand why people with disabilities fail to achieve the same qualifications as able-bodied people, regardless of how skilled they may be.
I am pessimistic, too, about the world of work. Instead of enjoying my first week in London, I spent my time anxiously trying to figure out how I could afford suitable accommodation and transport. Money preoccupies me constantly and leaves me wondering how I will survive if my condition deteriorates. An unpaid internship is out of the question for a disabled person.
The cost of living with a disability is higher than living without one. According to Scope, the charity, people with disabilities pay an average of £570 per month in additional living expenses because of their impairment. I spend more than £600 extra a month on special accommodation and transport.
Article 27 of the UN Convention on the Rights of Persons with Disabilities states the right of people with disabilities to work on an equal basis. However, the UN also reports that unemployment among people with disabilities is as high as 80 per cent in some countries. The statistics do not bode well for my future.
I am about halfway through my degree and I am on the verge of giving up. The only thing stopping me is the fear of slipping into the bracket of disabled, uneducated and unemployed.